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Título
Perception of social and educational quality of life of minors diagnosed with rare diseases: A systematic review and meta-analysis
Autor
Año del Documento
2023
Editorial
MDPI
Descripción
Producción Científica
Documento Fuente
International Journal of Environmental Research and Public Health, 2023, Vol. 20, Nº. 2, 933
Resumo
This study explores the perception of social and educational quality of life in minors with rare diseases (RDs). Two meta-analyses were performed, applying the random effects model. Results: Regarding the social Quality of Life, the meta-sample consisted of k = 40 samples, with a total population of 1943 children (mean age = 9.42 years), of whom 687 (35.3%) were girls, 615 (31.4%) were boys and 641 (33%) did not report their sex. The effect size was large (mean size = 7.68; p < 0.000; 99% Confidence Interval; lower limit = 7.22; upper limit = 8.14). The results of the meta-regression and model analysis showed the importance of the measurement instrument (Paediatric Quality-of-Life Inventory and Prototypes of the Quality of life) and the dissimilarity of perception among caregivers. The nationality and the type of RD were not relevant. With respect to the educational Quality of Life, the meta-sample consisted of k = 19 samples, with 699 minors (mean age = 10.3 years), of whom 266 (38%) were girls, 242 (34.6%) were boys and 191 (27.4%) did not report their sex. The effect size was large (mean size = 7.15; p < 0.000; 99% CI; lower limit = 6.35; upper limit = 7.94). The meta-regression and comparison of models showed that the type of RD was essential. The measurement instrument was a moderating variable, especially the Parent version Paediatric Quality-of-Life Inventory. This study reveals the need for further research on RDs and their social–educational effects.
Materias (normalizadas)
Rare diseases
Enfermedades raras
Quality of life
Calidad de vida
Education - Social aspects
Educación - Aspecto social
Educación de niños
Education
Children
Pediatrics
Public health
Materias Unesco
6310.03 Enfermedad
5312.04 Educación
3201.10 Pediatría
3212 Salud Publica
ISSN
1660-4601
Revisión por pares
SI
Patrocinador
Universidad de Valladolid - (PROYEMER-2021- 62)
Version del Editor
Propietario de los Derechos
© 2023 The authors
Idioma
eng
Tipo de versión
info:eu-repo/semantics/publishedVersion
Derechos
openAccess
Aparece en las colecciones
Arquivos deste item
Exceto quando indicado o contrário, a licença deste item é descrito como Atribución 4.0 Internacional